Debates relating to what makes a 'good death' often place particular emphasis on being pain free, peaceful and dignified but without dying being over-prolonged [1
]. One additional element being highlighted as increasingly important to the concept of a 'good death' is identifying patients' preferences for how wish to be cared for at the end of their lives and where they wish to die [4
Realising patients' preferences for the kind of care they wish to receive and the place of their death is often taken as a key indicator of quality of end of life care and there is evidence that if patients' preferences are discussed and documented they are more likely to be realised [6
]. In the United Kingdom (UK) there are increasing calls from policy makers, and some healthcare professionals for greater openness in the way that death and dying is talked about throughout society [4
]. Routine discussion of patient and carer preferences for end of life care is advocated as a means of promoting such openness and also as an effective lever for improving the experience of end of life care [7
]. Building on the work of the National End of Life Care programme launched in 2004, The National End of Life Care Strategy for England [5
] includes explicit reference to the need to increase public awareness of death and dying through discussing individual preferences for end of life care and notes specifically that 'All people approaching the end of life need to have their needs assessed, their wishes and preferences discussed and an agreed set of actions reflecting the choices they make about their care recorded in a care plan'
(p6, para 14).
A number of initiatives have been developed and evaluated that have specifically encouraged the discussion and documentation of preferences for care at the end of life. These include the National End of Life Care Programme launched in 2004 and the National Institute for Clinical Excellence (NICE) guidance on Improving Supportive and Palliative Care for Adults with Cancer [7
] which highlighted that many individuals with cancer had poorly co-ordinated care and little choice about where they die. The guidance specifies the use of tools such as the Gold Standards Framework [8
], Preferred Place of Care Plan [9
] and the Liverpool Care Pathway [10
] as appropriate mechanisms for supporting the provision of quality care at the end of life. Identifying that patients were under the care of providers working within these guidelines or on a care pathway that considered these issues was deemed to be beneficial to the quality of care they subsequently received. More recent guidelines from the Department of Health [5
], the Advance Care Planning Guidelines produced in 2009 by the Royal College of Physicians [11
] and the draft guidance on Quality Standards in End of Life Care currently being developed by NIHCE [12
] provide further support for the requirement to discuss and record preferences for care and place of death with patients and their families as they approach the end of their lives. There is some evidence that the use of care planning tools can result in improved documentation and that this can improve the decision making process in end of life care. For example, a randomised controlled trial of advance care planning among hospitalized patients aged over 80 found that it improved end of life care and patient and family satisfaction and reduced stress, anxiety, and depression in surviving relatives [6
], in addition, an audit of the care provided to patients who died in UK hospitals within 96 hours of admission found better end of life care (in terms of access to palliative care advice and communication with relatives and between health care teams) to be associated with care planning tools such as the Liverpool Care Pathway [13
The initiatives outlined above have led to an increased focus on the need to prompt discussion and record patients' preferences for care when they approach the end of their lives. However, there is evidence that engaging in care planning of this nature is not straightforward for either health care professionals or patients. The process of eliciting and documenting preferences for care at the end of life has been subject to some scrutiny over recent years and in a number of settings [14
]. These studies have demonstrated that, in spite of the plethora of initiatives and tools available to support discussion and record keeping, staff can find it difficult to initiate conversations about death and dying and then make a meaningful record of them. Even when conversations do take place patient preferences can change over time making the recording and tracking of decisions challenging [15
]. A retrospective review of the medical records of 310 adults who died in a Western Canadian Region [17
] identified that while there were clear institutional policies in place these were not always followed in practice in terms of documentation of discussions with patients and families [17
]. It is important to know, therefore, what is happening in practice in relation to professional engagement in discussing and planning care for end of life and subsequent documentation, as it serves to highlight where further initiatives may be required in order to support best practice in this area.
The findings presented in this paper are taken from a larger piece of work which sought to examine palliative and end of life care delivery in both cancer and non cancer (heart failure) patient populations. The element of the project reported in this paper had the specific objective of auditing the recording of discussions relating to end of life care, in particular preferences and outcomes for place of care while dying. Data were also collected that related to the presence/absence of Do Not Resuscitate (DNR) orders and whether an individual was identified as being on a particular care pathway related to end of life care.